Jane Kaye
Director of the Centre for Law, Health and Emerging Technologies at Oxford (HeLEX)
Other affiliations
St Cross College
Biography
Prof. Jane Kaye DPhil, LLB, Grad Dip Leg, BA is the Director of the Centre for Law, Health and Emerging Technologies (HeLEX) in the Faculty of Law at the University of Oxford and Professor of Health Law and Policy at the University of Melbourne. She is Senior Convenor of AI in Research and Research Training at the University of Melbourne. She established the Centre for Health, Law and Emerging Technologies at Melbourne Law School, University of Melbourne, Australia, which is now co-directed by Professor Mark Taylor and Dr Megan Prictor. She obtained her degrees from the Australian National University (BA); University of Melbourne (LLB); and University of Oxford (DPhil). The main focus of her research is on digital innovation with an emphasis on AI, digital privacy and dynamic consent, public involvement and engagement in research, biobanks, genomics, data-sharing infrastructure, global governance and translational research.
Professor Kaye is on a number of international expert committees and scientific advisory boards and has been on the Nuffield Council Bioethics Working Group on Biodata and Rapporteur for the EC Expert Report, Biobanks for Europe - A Challenge for Governance, June 2012. Most recently she was on the UN Taskforce on Health Data Privacy, appointed to the Scientific Advisory Board of the European biobanking platform BBMRI-ERIC, and is on the WP8 Advisory Group of the Joint European Action TEHDAS ‘Towards a European Health Data Space’. She also holds Associate Professorships at the Faculty of Law, University of Tasmania and at the Bioethics Centre, led by Professor Kazuto Kato at the Osaka Medical School, Japan. She is also on the editorial boards of Genomic Medicine, Law, Innovation and Technology, the Journal of Law, Information and Science
Publications
Biasiotto R and others, ‘Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.’ (2023) 25 Journal of Medical Internet Research e47066
Rothstein M and others, ‘Concordance of International Regulation of Pediatric Health Research.’ (2023) 260 The Journal of Pediatrics 113524
Allesøe R and others, ‘Author Correction: Discovery of drug-omics associations in type 2 diabetes with generative deep-learning models.’ (2023) 41(7) Nature Biotechnology 1026
Allesøe R and others, ‘Discovery of drug-omics associations in type 2 diabetes with generative deep-learning models.’ (2023) 41(3) Nature Biotechnology 399
Bicudo E and others, ‘Patent power in biomedical innovation: technology governance in biomodifying technologies’ (2022) 25(2) Journal of World Intellectual Property 473
MOURBY M and others, ‘Biomodifying the ‘Natural’: from Adaptive Regulation to Adaptive Societal Governance’ [2022] Journal of Law and the Biosciences
Rothstein M and others, ‘Streamlining ethics review for international health research.’ (2022) 375(6583) Science (New York, N.Y.) 825
Bin Abdul Aziz M, Morrison M and Kaye J, ‘Creative regulatory practices to develop stem-cell technology: the way forward for Malaysia’ (2021) 17(2) Regenerative Medicine 91
Lu J and others, ‘Meal-time glycaemia in adults with type 1 diabetes using multiple daily injections vs insulin pump therapy following carbohydrate-counting education and bolus calculator provision.’ (2021) 179 Diabetes Research and Clinical Practice 109000
Viberg Johansson J and others, ‘Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies’ (2021) 66 Technology in Society
Viberg Johansson J and others, ‘Preferences of the public for sharing health data: discrete choice experiment’ (2021) 9(7) JMIR Medical Informatics
Teare H, Prictor M and Kaye J, ‘Reflections on dynamic consent in biomedical research: the story so far.’ (2021) 29(4) European Journal of Human Genetics : EJHG 649
Haas M and others, ‘’CTRL’: an online, Dynamic Consent and participant engagement platform working towards solving the complexities of consent in genomic research.’ (2021) 29(4) European Journal of Human Genetics : EJHG 687
Bizzotto R and others, ‘Processes Underlying Glycemic Deterioration in Type 2 Diabetes: An IMI DIRECT Study.’ (2021) 44(2) Diabetes Care 511
Hamakawa N and others, ‘The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project.’ (2021) 7(1) Research Involvement and Engagement 9
O’Doherty K and others, ‘Toward better governance of human genomic data.’ (2021) 53(1) Nature Genetics 2
Johansson J and others, ‘PNS242 Identifying the Public’s Preferences for Sharing Health DATA Digitally’ (2020) 23 Value in Health s681
Nicol D and others, ‘Don Chalmers: His Contributions to Legal Research and Education, Health Law, and Research Ethics, Locally and Globally.’ (2020) 28(1) Journal of Law and Medicine 289
Prictor M and others, ‘Clinical Decision Support Systems and Medico-Legal Liability in Recall and Treatment: A Fresh Examination.’ (2020) 28(1) Journal of Law and Medicine 132
Morrison M and others, ‘Governance of research consortia: challenges of implementing Responsible Research and Innovation within Europe’ (2020) 16(1) Life Sciences, Society and Policy
Hamakawa N and others, ‘Landscape of participant-centric initiatives for medical research in the United States, the United Kingdom, and Japan: Scoping review’ (2020) 22(8) Journal of Medical Internet Research
Prictor M and others, ‘Dynamic Consent: An Evaluation and Reporting Framework.’ (2020) 15(3) Journal of Empirical Research on Human Research Ethics : JERHRE 175
Retzer A, Kaye J and Gray R, ‘Erratum: A factorial survey investigating the effect of disclosing parental intellectual disability on risk assessments by children’s social workers in child safeguarding scenarios (British Journal of Social Work (2020) 50 (1185-1200) DOI: 10.1093/bjsw/bcz076)’ (2020) 50(4) British Journal of Social Work 1295
Prictor M and others, ‘Australian Aboriginal and Torres Strait Islander Collections of Genetic Heritage: The Legal, Ethical and Practical Considerations of a Dynamic Consent Approach to Decision Making.’ (2020) 48(1) The Journal of Law, Medicine & Ethics : A Journal of the American Society of Law, Medicine & Ethics 205
de Neiva Borba M and others, ‘Direct to Participant Participation Country Reports: The United Kingdom’ [2020] Journal of Law, Medicine and Ethics
Kunkle B and others, ‘Author Correction: Genetic meta-analysis of diagnosed Alzheimer’s disease identifies new risk loci and implicates Aβ, tau, immunity and lipid processing.’ (2019) 51(9) Nature Genetics 1423
Retzer A, Kaye J and Gray R, ‘A Factorial Survey Investigating the Effect of Disclosing Parental Intellectual Disability on Risk Assessments by Children’s Social Worker in Child Safeguarding Scenarios’ [2019] The British Journal of Social Work
Koivula R and others, ‘Discovery of biomarkers for glycaemic deterioration before and after the onset of type 2 diabetes: descriptive characteristics of the epidemiological studies within the IMI DIRECT Consortium.’ [2019] Diabetologia
Nicol D and others, ‘Consent insufficient for data release.’ (2019) 364(6439) Science (New York, N.Y.) 445
MOURBY M and others, ‘Health Data Linkage for UK Public Interest Research: Key Obstacles and Solutions’ [2019] International Journal of Population Data Science
Mascalzoni D and others, ‘Are Requirements to Deposit Data in Research Repositories Compatible With the European Union’s General Data Protection Regulation?’ [2019] Annals of Internal Medicine
Shah N and others, ‘Motivations for data sharing—views of research participants from four European countries: A DIRECT study’ (2019) 27 European Journal of Human Genetics 721
Bell J and others, ‘Balancing Data Subjects’ Rights and Public Interest Research:’ (2019) 5(1) European Data Protection Law Review 43
BELL J and others, ‘Lawful Disclosure of Administrative Data for Research Purposes in the UK’ [2019] The Journal of Data Protection and Privacy
Shah N and others, ‘Sharing data for future research-engaging participants’ views about data governance beyond the original project: a DIRECT study’ (2018) 21 Genetics in Medicine 1131
Prictor M, Teare H and Kaye J, ‘Equitable participation in biobanks: The risks and benefits of a "Dynamic Consent" approach’ (2018) 6 Frontiers in Public Health
Teare H and others, ‘The governance structure for data access in the DIRECT consortium: an innovative medicines initiative (IMI) project.’ (2018) 14(1) Life Sciences, Society and Policy 20
Kaye J and others, ‘Including all voices in international data-sharing governance.’ (2018) 12(1) Human Genomics 13
Myhre S and others, ‘Governance guidance for an eRegistry for maternal and child health: lessons from the occupied Palestinian territory’ (2018) 391 LANCET 35
Teare H and Kaye J, ‘Dynamic consent – Improving translational research’ (2018) 50 Pathology s31
Parra-Calderón C and others, ‘Desiderata for digital consent in genomic research.’ (2018) 9(2) Journal of Community Genetics 191
Coathup V and others, ‘Making the most of the waiting room: Electronic patient engagement, a mixed methods study’ [2018] Digital Health
Bin Abdul Aziz M, Morrison M and Kaye J, ‘Regulating human stem cell research and therapy in low- and middle-income countries: Malaysian perspectives’ [2017] New Genetics and Society 1
Coathup V and others, ‘Participant-Centric Initiatives and Medical Research: Scoping Review Protocol.’ (2017) 6(12) JMIR Research Protocols e245
Morrison M and others, ‘The European General Data Protection Regulation: challenges and considerations for iPSC researchers and biobanks.’ (2017) 12(6) Regenerative Medicine 693
Mitchell C and others, ‘Exploring the potential duty of care in clinical genomics under UK law.’ (2017) 17(3) Medical Law International 158
Teare H and others, ‘The RUDY Study: Using Digital Technologies to Enable a Research Partnership’ [2017] European Journal of Human Genetics
Budin-Ljøsne I and others, ‘Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.’ (2017) 18(1) BMC Med Ethics 4
Giesbertz N and others, ‘Personalized assent for pediatric biobanks’ (2017) 12 BMC Medical Ethics 59
Forestier-Zhang L and others, ‘Health-related quality of life and a cost-utility simulation of adults in the UK with osteogenesis imperfecta, X-linked hypophosphatemia and fibrous dysplasia.’ (2016) 11(1) Orphanet J Rare Dis 160
Javaid M and others, ‘The RUDY study platform – a novel approach to patient driven research in rare musculoskeletal diseases’ [2016] Orphanet Journal of Rare Diseases
Myhre S and others, ‘eRegistries: governance for electronic maternal and child health registries.’ (2016) 16(1) BMC Pregnancy and Childbirth 279
Coathup V and others, ‘Using digital technologies to engage with medical research: views of myotonic dystrophy patients in Japan.’ (2016) 17(1) BMC Medical Ethics 51
Nicol D and others, ‘Precision medicine: drowning in a regulatory soup?’ (2016) 3(2) JOURNAL OF LAW AND THE BIOSCIENCES 281
Bell J and others, ‘Challenges and opportunities for ELSI early career researchers.’ (2016) 17(1) BMC Medical Ethics 37
Mitchell C and others, ‘A Duty To Warn Relatives in Clinical Genetics: Arguably ‘Fair just and reasonable’ in English Law?’ (2016) 32 Journal of Professional Negligence 120
Woolley J and others, ‘Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.’ (2016) 17(1) BMC Medical Ethics 33
Kaye J and others, ‘Consent for Biobanking: The Legal Frameworks of Countries in the BioSHaRE-EU Project.’ (2016) 14(3) Biopreservation and Biobanking 195
Budin-Ljøsne I and others, ‘Feedback of Individual Genetic Results to Research Participants: Is It Feasible in Europe?’ (2016) 14(3) Biopreservation and Biobanking 241
Kaye J and others, ‘Access Governance for Biobanks: The Case of the BioSHaRE-EU Cohorts.’ (2016) 14(3) Biopreservation and Biobanking 201
Kaye J and others, ‘Biobank Report: United Kingdom.’ (2016) 44(1) The Journal of Law, Medicine & Ethics : A Journal of the American Society of Law, Medicine & Ethics 96
Frøen J and others, ‘eRegistries: Electronic registries for maternal and child health.’ [2016] (1) BMC Pregnancy and Childbirth
Teare H and others, ‘Towards ’Engagement 2.0’: Insights from a study of dynamic consent with biobank participants (vol 2, pg 1, 2015)’ (2016) 2 DIGITAL HEALTH
Baker D, Kaye J and Terry S, ‘Governance Through Privacy, Fairness, and Respect for Individuals.’ (2016) 4(2) EGEMS (Washington, DC) 1207
Webborn N and others, ‘Direct-to-consumer genetic testing for predicting sports performance and talent identification: Consensus statement.’ (2015) 49(23) British Journal of Sports Medicine 1486
Morrison M and others, ‘StemBANCC: Governing access to material and data in a large stem cell research consortium.’ (2015) 11(5) Stem Cell Reviews 681
Teare H and others, ‘Towards ’Engagement 2.0’: Insights from a study of dynamic consent with biobank participants’ (2015) 1 Digital Health 1
Chalmers D and others, ‘Marking Shifts in Human Research Ethics in the Development of Biobanking’ (2015) 8(1) Public Health Ethics 63
Williams H and others, ‘Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research.’ (2015) 3(1) JMIR Medical Informatics e3
Kaye J and others, ‘Dynamic consent: a patient interface for twenty-first century research networks.’ (2015) 23(2) European Journal of Human Genetics : EJHG 141
Kaye J and others, ‘’Pop-Up’ Governance: developing internal governance frameworks for consortia: the example of UK10K.’ (2015) 11 Life Sciences, Society and Policy 10
Moraia L and others, ‘A comparative analysis of the requirements for the use of data in biobanks based in Finland, Germany, the Netherlands, Norway and the United Kingdom’ (2014) 14(4) Medical Law International 187
Kaye J and others, ‘Managing clinically significant findings in research: the UK10K example.’ (2014) 22(9) European Journal of Human Genetics : EJHG 1100
Kosseim P and others, ‘Building a data sharing model for global genomic research.’ (2014) 15(8) Genome Biology 430
Mitchell C, Moraia L and Kaye J, ‘Health database: Restore public trust in care.data project.’ (2014) 508(7497) Nature 458
Moraia L and Kaye J, ‘Spies, data and research.’ (2014) 15(3) EMBO Reports 200
Caulfield T and others, ‘A review of the key issues associated with the commercialization of biobanks.’ (2014) 1(1) Journal of Law and the Biosciences 94
Dixon W and others, ‘A dynamic model of patient consent to sharing of medical record data.’ (2014) 348 BMJ (Clinical Research ed.) g1294
Minari J and others, ‘The emerging need for family-centric initiatives for obtaining consent in personal genome research.’ (2014) 6(12) Genome Medicine 118
Kaye J and Hawkins N, ‘Data sharing policy design for consortia: challenges for sustainability.’ (2014) 6(1) Genome Medicine 4
Kaye J and others, ‘Can I access my personal genome? The current legal position in the UK.’ (2014) 22(1) Medical Law Review 64
Melham K and others, ‘The evolution of withdrawal: negotiating research relationships in biobanking.’ (2014) 10 Life Sciences, Society and Policy 16
Knoppers B and others, ‘A P3G generic access agreement for population genomic studies.’ (2013) 31(5) Nature Biotechnology 384
Muddyman D and others, ‘Implementing a successful data-management framework: the UK10K managed access model.’ (2013) 5(11) Genome Medicine 100
Harris J and others, ‘Toward a roadmap in global biobanking for health.’ (2012) 20(11) European Journal of Human Genetics : EJHG 1105
Budin-Ljøsne I and others, ‘ELSI challenges and strategies of national biobank infrastructures’ (2012) 21(2) Norsk Epidemiologi
Borry P and others, ‘Legislation on direct-to-consumer genetic testing in seven European countries.’ (2012) 20(7) European Journal of Human Genetics : EJHG 715
Kaye J and others, ‘Research priorities. ELSI 2.0 for genomics and society.’ (2012) 336(6082) Science (New York, N.Y.) 673
Kaye J, ‘Embedding biobanks as tools for personalised medicine’ (2012) 21(2) Norsk Epidemiologi
Murtagh M and others, ‘Navigating the perfect [data] storm’ (2012) 21(2) Norsk Epidemiologi
Whitley E, Kanellopoulou N and Kaye J, ‘Consent and research governance in biobanks: evidence from focus groups with medical researchers.’ (2012) 15(5) Public Health Genomics 232
Boddington P and others, ‘Consent forms in genomics: the difference between law and practice.’ (2011) 18(5) European Journal of Health Law 491
Kaye J, ‘From single biobanks to international networks: developing e-governance.’ (2011) 130(3) Human Genetics 377
Knoppers B and others, ‘From genomic databases to translation: a call to action.’ (2011) 37(8) Journal of Medical Ethics 515
O’Doherty K and others, ‘From consent to institutions: designing adaptive governance for genomic biobanks.’ (2011) 73(3) Social Science & Medicine (1982) 367
Knoppers B and others, ‘Towards a data sharing Code of Conduct for international genomic research.’ (2011) 3(7) Genome Medicine 46
Heeney C and others, ‘Assessing the privacy risks of data sharing in genomics.’ (2011) 14(1) Public Health Genomics 17
O’Doherty K and others, ‘From consent to institutions: Designing adaptive governance for genomic biobanks’ [2011] Social Science and Medicine
Curren L and others, ‘Identifiability, genomics and U.K. data protection law.’ (2010) 17(4) European Journal of Health Law 329
Curren L and Kaye J, ‘Revoking consent: A ‘blind spot’ in data protection law?’ (2010) 26(3) Computer Law & Security Review 273
Toronto International Data Release Workshop Authors and others, ‘Prepublication data sharing.’ (2009) 461(7261) Nature 168
Hawkins N and others, ‘Planning for translational research in genomics.’ (2009) 1(9) Genome Medicine 87
Avard D and others, ‘Public Health Genomics (PHG) and Public Participation: Points to Consider’ (2009) 5(1) Journal of Deliberative Democracy 7
Boddington P and others, ‘The path forward for DNA data.’ (2008) 322(5905) Science (New York, N.Y.) 1186
Kaye J and Gibbons S, ‘Mapping the Regulatory Framework for Human Genetic Databases in England and Wales’ (2008) 9(2) Medical Law International 111
Zika E and others, ‘Sample, data use and protection in biobanking in Europe: legal issues.’ (2008) 9(6) Pharmacogenomics 773
Caulfield T and others, ‘Research ethics recommendations for whole-genome research: consensus statement’ (2008) 6(3) PLoS Biology ARTN e73
Kaye J, ‘Testing times: What is the legal situation when an adolescent wants a genetic test?’ (2007) 2(4) Clinical Ethics 176
Kaye J, Hawkins N and Taylor J, ‘Patents and translational research in genomics.’ (2007) 25(7) Nature Biotechnology 739
Gibbons S and others, ‘Governing Genetic Databases: Challenges Facing Research Regulation and Practice’ (2007) 34(2) Journal of Law and Society 163
Gibbons S and Kaye J, ‘GOVERNING GENETIC DATABASES: COLLECTION, STORAGE AND USE.’ (2007) 18(2) King’s Law Journal : KLJ ukpmcpa1468
Lucassen A and Kaye J, ‘Genetic testing without consent: the implications of the new Human Tissue Act 2004.’ (2006) 32(12) Journal of Medical Ethics 690
Kaye J, ‘Do we need a uniform regulatory system for biobanks across Europe?’ (2006) 14(2) European Journal of Human Genetics : EJHG 245
Gibbons S and others, ‘Lessons from European population genetic databases: comparing the law in Estonia, Iceland, Sweden and the United Kingdom.’ (2005) 12(2) European Journal of Health Law 103
Tutton R, Kaye J and Hoeyer K, ‘Governing UK Biobank: the importance of ensuring public trust.’ (2004) 22(6) Trends in Biotechnology 284
Kaye J and others, ‘POPULATION GENETIC DATABASES: A COMPARATIVE ANALYSIS OF THE LAW IN ICELAND, SWEDEN, ESTONIA AND THE UK’ (2004) 8(1/2) Trames Journal of the Humanities and Social Sciences 15
Kaye J, ‘Genetic research on the UK population--do new principles need to be developed?’ (2001) 7(11) Trends in Molecular Medicine 528
Kaye J, ‘Report may lead to population collection by the back door.’ (2001) 323(7313) BMJ (Clinical Research ed.) 632
Kaye J and Martin P, ‘Safeguards for research using large scale DNA collections.’ (2000) 321(7269) BMJ (Clinical Research ed.) 1146
Martin P and Kaye J, ‘The use of large biological sample collections in genetics research: Issues for public policy’ (2000) 19(2) New Genetics and Society 165
KAYE J, TEARE H and BELL J, ‘Consent for Data Processing under the General Data Protection Regulation: Could ’Dynamic Consent’ be a Useful Tool for Researchers?’ Journal of Data Protection and Privacy
Kaye J and others, ‘Moving beyond Technical Issues to Stakeholder Involvement: Key Areas for Consideration in the Development of Human-Centred and Trusted AI in Healthcare’ Asian Bioethics Review
Morioke S and others, ‘Survey of hereditary angioedema episodes and quality of life impairment through a patient-participatory registry’ 7 Journal of Cutaneous Immunology and Allergy 12626
Bell J, Mourby M and Kaye J, ‘Contractual Mechanisms for Securing the Public Interest in Data Sharing in Public-Private Health Research Partnerships’ 20(2) SCRIPT-ed 325
Kaye J and Stranger M, Principles and Practice in Biobank Governance (2016) 1
Stranger M and Kaye J, Governing Biobanks: An Introduction (2016) 1
Kaye J and others, Governing Biobanks (Hart Pub 2012)
Kaye J and others, Governing Biobanks: Understanding the Interplay between Law and Practice (2012) 1
Kaye J and Stranger M, Principles and practice in biobank governance (2009) 1
Stranger M and Kaye J, Governing biobanks: An introduction (2009) 1
Kaye J and Prictor M, ‘Consent’, The Cambridge Handbook of Health Research Regulation (Cambridge University Press (CUP) 2021)
Kaye J and Prictor M, ‘Dynamic Consent and biobanking: a means of fostering sustainability?’, GLOBAL GENES, LOCAL CONCERNS: LEGAL, ETHICAL, AND SCIENTIFIC CHALLENGES IN INTERNATIONAL BIOBANKING (2019)
Martin P and Kaye J, ‘The use of large biological sample collections in genetics research: Issues for public policy’, Reconfiguring Nature (2004): Issues and Debates in the New Genetics (2018)
Kaye J and others, ‘Trends and challenges in biobanking’ in I Freckleton and K Petersen (eds.), Tensions and Traumas in Health Law (2017)
Kaye J, Bell J and Prictor M, ‘Trends and challenges in biobanking, tensions and and traumas in health law’ in I Freckelton and K Petersen (eds.), Tensions and Traumas in Health Law (The Federation Press 2017)
Kaye J, ‘Biobanking Networks - What are the Governance Challenges?’, Principles and Practice in Biobank Governance (2016)
Kaye J, ‘The Tension Between Data Sharing and the Protection of Privacy in Genomics Research’, Ethics, Law and Governance of Biobanking (Springer Nature 2015)
Kaye J, ‘The Regulation of Human Genomics Research’, Genomic Medicine (Oxford University Press (OUP) 2014)
Hawkins N and others, ‘Ownership of biomedical information in biobanks’ in P G | Izzo U | Mailotti M. (ed.), Comparative Issues in the Governance of Research Biobanks (Springer 2013)
Kaye J, ‘Biobanking networks – What are the governance challenges?’, Principles and Practice in Biobank Governance (2012)
Kaye J, Dutton W and Piper T, ‘The politics of privacy, confidentiality, and ethics: Opening research methods: Data sharing in genomics-is it lawful?’, World Wide Research: Reshaping the Sciences and Humanities (2010)
Kaye J, ‘Biobanking networks - What are the governance challenges?’, Principles and Practice in Biobank Governance (2009)
Parker M, kaye J and Blair E, ‘Predictive genetic testing of adolescents at risk of inherited arrhythmic death’ in C Rehmann-Sutter and H Müller (eds.), Disclosure dilemmas (Ashgate Publishing 2009)
Kaye J, ‘Regulating human genetic databases in Europe’, ETHICS AND GOVERNANCE OF HUMAN GENETIC DATABASES: EUROPEAN PERSPECTIVES (2007)
Kaye J, ‘The legal jigsaw governing population genetic databases: Concluding remarks on the ELSAGEN legal findings’, The Ethics and Governance of Human Genetic Databases: European Perspectives (2007)
Kaye J, ‘Regulating human genetic databases in Europe’, The Ethics and Governance of Human Genetic Databases: European Perspectives (2007)
Kaye J, ‘Abandoning informed consent: The case of genetic research in population collections’, Genetic Databases: Socio-Ethical Issues in the Collection and Use of DNA (2004)
Johansson V and others, ‘IDENTIFYING THE PUBLIC’S PREFERENCES FOR SHARING HEALTH DATA DIGITALLY’, VALUE IN HEALTH (2020)
Mascalzoni D and others, ‘Are requirements to deposit data in research repositories compatible with the GDPR?’, EUROPEAN JOURNAL OF HUMAN GENETICS (2019)
Zhang L and others, ‘USING THE RUDY STUDY PLATFORM TO CAPTURE QUALITY OF LIFE OF ADULTS WITH RARE DISEASES OF THE BONE’, OSTEOPOROSIS INTERNATIONAL (2016)
Shah N and others, ‘Governing health data across changing contexts: a focus group study of citizen’s views in England, Iceland, and Sweden’ (2021) 156 International Journal of Medical Informatics (review)
Sipp D and others, ‘Marketing of unproven stem cell-based interventions: A call to action.’ (2017) 9(397) Science Translational Medicine (review)
De Clercq E and others, ‘Returning Results in Biobank Research: Global Trends and Solutions.’ (2017) 21(3) Genet Test Mol Biomarkers 128 (review)
Chalmers D and others, ‘Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era.’ (2016) 17(1) BMC Medical Ethics 39 (review)
McGinn S and others, ‘New technologies for DNA analysis--a review of the READNA Project.’ (2016) 33(3) New Biotechnology 311 (review)
Spencer K and others, ‘Patient perspectives on sharing anonymized personal health data using a digital system for dynamic consent and research feedback: A qualitative study’ (2016) 18(4) Journal of Medical Internet Research (review)
Kaye J and others, ‘From patients to partners: participant-centric initiatives in biomedical research.’ (2012) 13(5) Nature Reviews. Genetics 371 (review)
Kaye J, ‘The tension between data sharing and the protection of privacy in genomics research.’ (2012) 13 Annual Review of Genomics and Human Genetics 415 (review)
Kaye J and others, ‘Ethical implications of the use of whole genome methods in medical research.’ (2010) 18(4) European Journal of Human Genetics : EJHG 398 (review)
Church G and others, ‘Public access to genome-wide data: five views on balancing research with privacy and protection.’ (2009) 5(10) PLoS Genetics (review)
Caulfield T and Kaye J, ‘Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas’ (2009) 10(2) Medical Law International 85 (review)
Kaye J and others, ‘Data sharing in genomics--re-shaping scientific practice.’ (2009) 10(5) Nature Reviews. Genetics 331 (review)
Kaye J, ‘The regulation of direct-to-consumer genetic tests.’ (2008) 17(R2) Human Molecular Genetics R180 (review)
Johnston C, Kaye J and Bell J, ‘Who owns your DNA?’ (2017) Pursuit (Melbourne University) Legal Affairs
Watts L and others, ‘THE RUDY STUDY: A NOVEL APPROACH TO PATIENT DRIVEN RESEARCH IN RARE MUSCULOSKELETAL DISEASES’ (2016) S325
Kaye J, ‘The use of biological sample collections and personal medical information in human genetics reasearch: Issue for social science research and public policy’ (1999) Wellcome Trust
Bicudo E and others, ‘Patent Power in Biomedical Innovation: Technology Governance in Biomodifying Technologies’
Viberg Johansson J and others, ‘Preferences of the Public for Sharing Health Data: Discrete Choice Experiment (Preprint)’
Prictor M and others, ‘Consent for Data Processing Under the General Data Protection Regulation: Could ’Dynamic Consent’ Assist Researchers?’
Consortium P-U and others, ‘PGP-UK: a research and citizen science hybrid project in support of personalized medicine’
Hamakawa N and others, ‘Landscape of Participant-Centric Initiatives for Medical Research in the United States, the United Kingdom, and Japan: Scoping Review (Preprint)’
Biasiotto R and others, ‘Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries (Preprint)’
Bell J and others, ‘Governing stem cells: regenerative medicine in Europe - the vision and recommendations from the EUCelLEX project’ (Genotoul Societal 2018)
KAYE J and others, ‘JRC Science for Policy Report - Overview of EU National Legislation on Genomics’ (Publications Office of the European Union 2018)